The 2026 Abbey Meyers Khushi Bridging RARE Award Honorees
IndoUSrare and GORD Foundation are honored to announce the 2026 Abbey Meyers Khushi Bridging RARE Award Honorees: Rare Disease is a global problem, a human
JumpStart
JumpStart
The Orphan Disease Center’s JumpStart program serves to establish and progress research agendas in emerging and neglected rare diseases. The JumpStart program partners with patient groups and families to address gaps by identifying key opinion leaders and introducing new researchers to a disease. The program can help facilitate the development of animal models, establish a patient alliance or a patient registry, and organize symposia. Due to limited resources, ODC is unable to provide financial support. JumpStart primarily offers scientific advisement and network outreach.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
- Emerging and neglected rare diseases
Resources & Support
Patient Worthy Posts on Rare Disease
My Big Sister
Editor’s Note: Patient Worthy is honored to present this story, shared with us by our friends at the Courageous Parents Network. Originally written by Dr.
When Your Cells’ Quality Control System Breaks Down: Understanding a Major Discovery in Rare Disease Research
The Basic Problem: Why One Bad Gene Can Cause Big Trouble Imagine your body as a giant factory. Like any factory, it needs quality control—machines
Diagnosing the Undiagnosed in Rare Disease: Worldwide, Multi-Institution, and Multi-disciplinary Work Underway
Recently at the World Orphan Drug Conference in Boston, Patient Worthy had the opportunity to meet with Dave Pearce PhD, Chair of International Rare Disease
The Child Who Defied the Textbooks
The human body is governed by an ancient, rapid-response defense system. When an invader attacks, the innate immune system rushes to the front lines like
RNA “Origami” Nanopore Technique Shows Promise for Faster Diagnosis of Repeat Expansion Disorders
As reported on MedicalXpress, a newly developed RNA-focused analytical method may improve the detection and characterization of repeat expansion disorders, a group of genetic conditions
